Department of Nursing, Shu-Zen College of Medicine and Management, Luju Kaohsiung Hsien, Taiwan.
J Clin Nurs. 2009 Jun;18(12):1684-92. doi: 10.1111/j.1365-2702.2008.02750.x.
The aim of this study was to investigate from the perspectives of the donor parents of children with biliary atresia, the essence of family experiences during the period when waiting for a living donor liver transplant.
Living donor liver transplantation is a new hope for children and families when the child suffers from biliary atresia. It is obvious, during the waiting period, for a family with a child undergoing living donor liver transplantation, that the process has a serious impact and there is a need for them to be well-prepared.
A descriptive phenomenological design was used in this study.
Nine donor parents from a medical centre in Taiwan participated in this study. The inclusion criteria were that the parent had a child with biliary atresia, that the child had received living donor liver transplantation over the last year and a half and that the parent was the living donor for child's liver transplantation. An open in-depth interview technique encouraged the parents to reflect on their experiences as the process raised their feelings to a conscious level. The data were analysed using the Colaizzi's approach.
This study explores the essence of families undergoing the waiting period for living donor liver transplantation surgery from the point of view of the donating parents. Five themes emerged: (1) surgery as hope of rebirth, (2) negotiating the decision to have surgery, (3) the selection of the donor to achieve family welfare, (4) preparing and planning for the surgery and (5) worry over the impact of the surgery.
The results demonstrate that the parents' experiences included a variety of domains: hope of rebirth, mental negotiation while deciding on surgery and choice of donor, coping with the preparation for surgery and the possible impact on the family of the surgery.
The findings indicated that nursing professionals should provide family-centred care to assist the family with the steps needed to move toward surgery.
本研究旨在从胆道闭锁患儿供体父母的角度出发，探讨等待活体供肝移植期间家庭经历的本质。
活体肝移植为患有胆道闭锁的儿童及其家庭带来了新的希望。对于正在接受活体肝移植的家庭来说，在等待期间，这个过程显然会产生严重的影响，他们需要做好充分的准备。
本研究采用描述性现象学设计。
本研究纳入了来自中国台湾一家医疗中心的 9 名供体父母。纳入标准为：父母一方有胆道闭锁患儿，患儿在过去一年半内接受过活体肝移植，且父母一方是患儿肝移植的活体供者。采用开放式深入访谈技术鼓励父母反思自己的经历，因为这一过程使他们的感受上升到了意识层面。使用 Colaizzi 的方法对数据进行分析。
本研究从供体父母的角度探讨了等待活体肝移植手术期间家庭的本质。出现了 5 个主题：(1)手术是重生的希望，(2)协商手术决策，(3)选择供者以实现家庭利益，(4)为手术做准备和计划，(5)对手术影响的担忧。
研究结果表明，父母的经历包括多个方面：对重生的希望、决定手术时的心理博弈以及供者的选择、应对手术准备以及手术可能对家庭产生的影响。
研究结果表明，护理专业人员应提供以家庭为中心的护理，帮助家庭完成迈向手术的必要步骤。
